PT - JOURNAL ARTICLE AU - Marieke Verkleij AU - Iris Appelman AU - Josje Altenburg AU - Jos Twisk AU - Alexandra L. Quittner AU - Eric Haarman TI - Anxiety and depression in Dutch patients with Primary Ciliary Dyskinesia and their caregivers: associations with health-related quality of life AID - 10.1183/23120541.00274-2021 DP - 2021 Jan 01 TA - ERJ Open Research PG - 00274-2021 4099 - http://openres.ersjournals.com/content/early/2021/07/15/23120541.00274-2021.short 4100 - http://openres.ersjournals.com/content/early/2021/07/15/23120541.00274-2021.full AB - Background Primary Ciliary Dyskinesia (PCD) might be a risk factor for the development of anxiety and depression. This study investigated the associations between anxiety, depression and health-related quality of life (HRQoL) in individuals with PCD and their caregivers.Methods Children, adolescents and adults with PCD and their caregivers were invited to participate in a mental health screening program. During regular yearly outpatient visits, measures of anxiety (GAD-7), depression (PHQ-9), HRQoL (QOL-PCD), lung function (FEV1) and Body Mass Index (BMI)) were collected and associations of anxiety, depression and HRQL were estimated.Results 103 individuals participated in the mental health screening program. Elevated levels of anxiety (scores≥10 on GAD-7) were found in 6% of adults (n=33), 14% of children (n=7), 6% of adolescents (n=17) and 20% of caregivers (n=46, 52% mothers). Elevated depression levels (scores≥10 on PHQ-9) were found in 18% of adults, 14% of children, 6% of adolescents and 11% of caregivers. Anxiety and depression were associated with scales on the QOL-PCD. Mothers reported higher anxiety scores than fathers (30% versus 9%, p=0.03). A strong negative relationship was found between depression in caregivers and Physical Functioning (QOL-PCD) of the child. Anxiety and depression were not significantly associated with anxiety/depression in their child.Conclusion This is the first study investigating anxiety and depression in individuals with PCD and their caregivers. Our results revealed elevated levels of anxiety and depression, which were associated with worse HRQoL. These results suggest the need for psychological support in PCD.FootnotesThis manuscript has recently been accepted for publication in the ERJ Open Research. It is published here in its accepted form prior to copyediting and typesetting by our production team. After these production processes are complete and the authors have approved the resulting proofs, the article will move to the latest issue of the ERJOR online. Please open or download the PDF to view this article.Conflict of interest: Dr. Verkleij has nothing to disclose.Conflict of interest: Dr. Appelman has nothing to disclose.Conflict of interest: Dr. Altenburg has nothing to disclose.Conflict of interest: Dr. Twisk has nothing to disclose.Conflict of interest: Dr. Quittner has nothing to disclose.Conflict of interest: Dr. Haarman has nothing to disclose.